1

Introduction

The completion of the Human Genome Project in 2003 indicated that humans are 99.9 percent identical at the DNA level and that race has no genetic basis (Duello et al., 2021; NHGRI, n.d.). Most biomedical scientists now realize that race is a sociopolitical construct that has been used to establish or to rationalize a social hierarchy. However, there is a lack of consensus as to whether race is “biologically meaningless” and whether it should be used in the design of research studies or in medical decision making. Because human populations were relatively isolated throughout much of their history, genetic variants can be geographically clustered, and some of this variability may portend differential disease risk. Since race and geographic ancestry share considerable overlap, some biomedical scientists and physicians believe that, in some cases, race may serve as a proxy, albeit imperfect, for geographic ancestry and thus could provide useful information in biomedical contexts (Futterman et al., 2024). Yet, the potential benefits of using race must be balanced against the potential for harm, and scientific validity must always be scrutinized.

History is replete with the inappropriate and harmful use of race in biomedical research. “Race science,” which posits that humans can be divided into biologically separate groups that manifest distinct physical and mental characteristics, has influenced biomedical research for centuries.¹ Different expressions of human characteristics have contributed to the perception of biological racial differences, but research in the genomic era has found that genetic variation among populations follows overlapping, continuous distributions (Jorde and Wooding, 2004). As problematic uses of race garnered attention, many turned to ethnicity as a more palatable alternative, but ethnicity suffers from similar shortcomings in research, and the two constructs are often used interchangeably. Despite race science having been disproven by decades of research, persistent misuse

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¹ https://race.undark.org/ (accessed September 4, 2024).

of race and ethnicity in biomedical research and health care continues to harm racial and ethnic minority groups. Race and ethnicity continue to be used in some biomedical research that has been used to construct medical standards for the diagnosis, prognosis, and treatment of many diseases, including in cardiology, cardiac surgery, nephrology, obstetrics, urology, oncology, endocrinology, and pulmonology (Vyas et al., 2020). Race and ethnicity are also used in diagnostic testing and research regarding cholesterol, bone density, ultraviolet damage in human skin, pain tolerance, neonatal jaundice, body mass index thresholds, diabetes, and breast cancer, to name a few.

LEARNING FROM PAST INJUSTICES AND CHARTING A PATH FORWARD

It is important to acknowledge the dark history in biomedical research using human participants. Both historical and contemporary injustices have resulted in persistent health and health care disparities for racial and ethnic minority groups. Members of racial and ethnic minority groups were disproportionately exploited in previous biomedical research studies, which served as the basis for modern-day standards for genetics, clinical guidelines, and medical practices for all races. For instance, unethical medical research conducted in Nazi Germany on Jewish and other minority groups continues to affect medical knowledge and practice today (Hildebrandt, 2021; Yee et al., 2019). In addition, current gynecological standards and practices are based on exploitive experiments done on Black enslaved women in the United States (Gamble, 1997; Ojanuga, 1993; Washington, 2006) (see Chapter 3 for information on obstetrics). The hormone pills used to protect women against anemia and ovarian cysts—as well as to significantly reduce women’s risk of ovarian cancer, colon cancer, and endometrial cancers—were tested unethically in experiments on Puerto Rican women (Blakemore, 2018; Liao and Dollin, 2012). Research on sexually transmitted diseases without the consent of participants has disproportionately used members of racial and ethnic minority populations, including the U.S. Public Health Service Syphilis Study at Tuskegee and U.S. Public Health Service studies of syphilis in Guatemala (Gray, 2002; Reverby, 2010; Rodriguez and García, 2013). In a more contemporary example, blood samples from members of the Havasupai Tribe that were originally collected for a diabetes study were unethically used for other genomic studies without proper informed consent from the Tribe, prompting legal action against researchers at Arizona State University in the early 2000s (Chadwick et al., 2019; Garrison, 2013; Garrison and Carroll, 2023). These harms have contributed to ongoing mistrust of the research and medical establishment among racial and ethnic minority populations.

Even though members of racial and ethnic minority groups were often used as subjects in biomedical research that serves as the basis for medical standards for all racial groups, some biomedical research perpetuated the misguided notion that these individuals are biologically different from White individuals—a practice that harms people of all races by misidentifying the causes of disease (Williams et al., 2019; Yearby, 2021). For example, sickle cell disease is often misrepresented in medical

guidelines, standards of care, and biomedical research based on erroneous assumptions that sickle cell was a Black disease (Adler and Rehkopf, 2008; Herrick, 1910; NIH, 2002; Okwerekwu, 2017; Solovieff et al., 2011; Tanabe et al., 2019). It is true that birth prevalence rates of sickle-cell-related hemoglobinopathies are higher among Black individuals (Feuchtbaum et al., 2012; Ojodu et al., 2014). However, people from different places (Afghanistan, Bangladesh, Burma, Greece, Honduras, India, Indonesia, Italy, Spain, and Turkey), who may identify with different racial and ethnic categories (Asian, White, Latino), also suffer from sickle cell disease but may be overlooked for testing and treatment (Bloom, 1995; Wilkinson, 1974). By the 1950s, researchers began to argue that the disease was linked to environmental factors (Allison, 1954; Wailoo, 1996), and studies have since shown that the geographic distribution of sickle cell trait reflects the global disease burden of malaria, such that sickle cell disease is not equally prevalent throughout Africa (Piel et al., 2010). Despite evidence demonstrating the role of environment, the disease is often still racialized (Nelson and Hackman, 2013; Shriner and Rotimi, 2018; Swetlitz, 2016; Wakefield et al., 2018). Sickle cell disease also offers an illustrative example of the intersection between health, race and ethnicity, and biomedical research. As a condition that has been labeled as a primarily “Black” disease in the United States, sickle cell disease receives less research funding than does cystic fibrosis, which has been labeled as a disease that primarily affects White populations (Farooq et al., 2020).

Importance of Health Equity

To combat these injustices, a commitment to health equity can help eliminate disparities and prevent future harm. Health equity is defined as “the attainment of the highest level of health for all people. Achieving health equity requires valuing everyone equally with focused and ongoing societal efforts to address avoidable inequalities, historical and contemporary injustices, and the elimination of health and health care disparities” (HHS, n.d.). This definition of health equity has been adopted by the Centers for Disease Control and Prevention and published in Healthy People 2030, a report used to set national health goals (see Chapter 5 for more discussion). Health equity efforts strive to eliminate injustices in biomedical research and make the legal requirements of nondiscrimination, found in the 14th Amendment of the Constitution, Title VI of the Civil Rights Act of 1964, and Section 1557 of the Patient Protection and Affordable Care Act of 2010, a reality for members of racial and ethnic minority groups. Government policies, such as the National Institutes of Health inclusion enrollment form and U.S. Food and Drug Administration (FDA)’s draft guidance for collecting race and ethnicity data,² seek to ensure that all individuals can participate in and have access to research that may benefit individual health.

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² https://www.fda.gov/regulatory-information/search-fda-guidance-documents/collection-race-and-ethnicity-data-clinical-trials-and-clinical-studies-fda-regulated-medical (accessed October 16, 2024).

Making Progress Toward Health Equity Through Biomedical Research

Biomedical research can help make progress toward achieving health equity by intervening earlier in the research and health care pipeline. Harmful mistakes and longstanding assumptions get “baked in” to research results and are hard to later excavate, as discussed above in the example of sickle cell disease. There are many challenges the biomedical research community will need to navigate, ranging from making erroneous assumptions to the pressure to publish, that can further entrench existing practices. In addition, research participation among diverse racial and ethnic communities is a complex issue and requires ongoing attention, and nondiverse study teams often set research agendas that neglect diseases or concerns that affect racial and ethnic minority populations.

Recently, the rise of artificial intelligence (AI), including machine learning, is highlighting existing bias in the biomedical research evidence base and unresolved concerns about past research practices. Inconsistent evaluation of results, models, and tools as well as varied findings have generated uncertainty and debate over whether to use race and ethnicity in clinical decision tools and how to rectify issues of inequitable health care for members of racial and ethnic minority populations (see Chapter 3, section “History and Current Practices of Race Correction” for further discussion) (Gershengorn et al., 2021; Rosen et al., 2023; Tipton et al., 2023; Tsai et al., 2021; Vyas et al., 2020; Yearby, 2021). Some tools, such as clinical algorithms, clinical practice guidelines, and clinical care pathways, are susceptible to human-introduced racial biases that can affect decisions about who receives disease diagnoses and treatment (Rosen et al., 2023; Tipton et al., 2023; Vyas et al., 2020). Once these clinical tools have been designed and implemented in clinical practice, there is often insufficient evaluation of whether these tools perpetuate health inequities (Tipton et al., 2023). In addition, despite wide variability in the ascertainment and completeness of race and ethnicity information in datasets, some researchers continue to use suboptimal datasets to make inferences and inform their work. Therefore, clear standards and best practices are needed to address how race and ethnicity are used in research design and clinical decision-making tools.

Biomedical researchers are faced with deciding when and how to use race and ethnicity for their studies (Knerr et al., 2011); however, why race and ethnicity should or should not be used is often unclear (Roberts, 2012, 2021). For example, federal research grants require the use of a minimum set of racial and ethnic categories for the purposes of monitoring inclusion in studies. Although the categories are “not an attempt to define race and ethnicity biologically or genetically” (OMB, 2024, p. 22183) (see Chapter 2 for more information about U.S. race and ethnicity categories), using race and ethnicity for inclusion purposes can easily be conflated with their use for scientific analyses. For all these reasons, clear guidance is needed to clarify and improve the use of race and ethnicity in biomedical research.

Given these complexities and the lack of clarity for navigating them, this committee was assembled to assess the current use of racial and ethnic categories in biomedical research, review existing guidance for the use of these constructs, and provide recommendations to the research community to guide the future use of race and ethnicity.

STUDY BACKGROUND AND THE COMMITTEE’S TASK

Much has been written in peer-reviewed journals and debated by professional societies to try to stem the misuse of race and ethnicity in biomedical research and clinical care. Among these publications are five National Academies of Sciences, Engineering, and Medicine (National Academies) reports and a workshop proceedings that were published in 2022 and 2023, each focusing on the use of race and ethnicity in research, clinical care, and STEMM (science, technology, engineering, mathematics, and medicine) education. The publications are:

• Advancing Antiracism, Diversity, Equity, and Inclusion in STEMM Organizations: Beyond Broadening Participation³;
• Federal Policy to Advance Racial, Ethnic, and Tribal Health Equity⁴;
• Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups⁵;
• Structural Racism and Rigorous Models of Social Inequity: Proceedings of a Workshop⁶;
• Toward Equitable Innovation in Health and Medicine: A Framework⁷; and
• Using Population Descriptors in Genetics and Genomics Research: A New Framework for an Evolving Field.⁸

This current report, sponsored by the Doris Duke Foundation (DDF) and the Burroughs Wellcome Fund, seeks to build upon these research studies and reports. To address some of the root causes of health inequities, the study’s sponsors are investing in projects such as Racial Equity in Clinical Equations, a DDF initiative that is dedicated to providing “the evidence necessary to move beyond the use of [clinical] tools that are known to be inconsistent in their use of race as a factor” and “to accelerate the creation of uniform evidence-based guidelines for the use of race information in research related to the design and use of clinical decision-making tools” (Doris Duke Foundation, 2023). This National Academies study was developed under DDF’s broader portfolio of work to provide a landscape exploration of how race and ethnicity are used across biomedical research as a whole. The National Academies assembled an ad hoc

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³ https://nap.nationalacademies.org/catalog/26803/advancing-antiracism-diversity-equity-and-inclusion-in-stemm-organizations-beyond (accessed January 8, 2025).

⁴ https://nap.nationalacademies.org/catalog/26834/federal-policy-to-advance-racial-ethnic-and-tribal-health-equity (accessed January 8, 2025).

⁵ https://nap.nationalacademies.org/catalog/26479/improving-representation-in-clinical-trials-and-research-building-research-equity (accessed January 8, 2025).

⁶ https://nap.nationalacademies.org/catalog/26690/structural-racism-and-rigorous-models-of-social-inequity-proceedings-of (accessed January 8, 2025).

⁷ https://nap.nationalacademies.org/catalog/27184/toward-equitable-innovation-in-health-and-medicine-a-framework (accessed January 8, 2025).

⁸ https://nap.nationalacademies.org/catalog/26902/using-population-descriptors-in-genetics-and-genomics-research-a-new (accessed January 8, 2025).

committee comprised of biomedical scientists, physician and nurse scientists, epidemiologists, social scientists, and experts in law, anthropology, ethics, and biomedical informatics. All of the 16 committee members conduct research in health disparities, health equity, or the impacts of social forces like structural racism and discrimination.

The committee’s charge was to evaluate how the social constructs of race and ethnicity are currently used in biomedical research and to provide guidance to the scientific community on the future use of race and ethnicity in biomedical research (see Box 1-1 for the Statement of Task). During the committee’s first public session, the sponsors presented the charge to the committee and clarified the statement of task, which includes developing a report with findings, conclusions, and recommendations regarding the use of race and ethnicity in biomedical research and implementation strategies to help enhance the adoption of best practices across the biomedical research community.

In the inaugural meeting of the committee, the sponsors identified two central goals for this study. The first is that any researchers who introduce or come across race or ethnicity information in their study designs will thoughtfully and methodically decide whether to use this information to draw inferences and, if they choose to do so, will understand the implications of their decisions, including how they may perpetuate the notion that race or ethnicity is biological or could lead to harm. The second goal is for the report to provide to researchers in academia, government, industry, funding agencies, journals, and professional societies a set of clear best practices on how to determine when the consideration of race and ethnicity in research design is rigorous, especially when the outcome of the research will be used for clinical purposes. The sponsors emphasized the value of characterizing standards of rigor for the research community to uphold regarding the use of race and ethnicity in biomedical research. Specifically, the sponsors asked the committee to provide guidance to the research community on whether, when, and how to use race and ethnicity in the design, development, and evaluation of clinical tools, methods, and devices, with the objective of improving health equity. Therefore, this report provides guidance to researchers to enable them to reconcile their mandate to include diverse populations in their studies or to study the effects of racism without falling into the trap of misusing race, ethnicity, and related terms in ways that impede scientific advances and aggravate health inequities.

Scope of the Report

Although race and ethnicity were the focus of this study, these concepts are associated with the concept of ancestry. Ancestry can be defined as a person’s origin or descent, lineage, “roots,” or heritage, including kinship (NASEM, 2023). People are familiar with their family tree, which is made up of their biological ancestors and thus reflects in one way their personal ancestry. Acknowledging the ways that ancestry, race, and ethnicity are intertwined, the committee has included ancestry considerations within the scope of this report. Certainly, race, ethnicity, and ancestry are not an exhaustive set of ways to describe individuals and populations of people in research contexts. Although biological sex, gender identity, and sexual orientation are important, nuanced dimensions of identity and health, this study does not include recommendations on sex,

gender, or other dimensions of identity as they are out of scope of the statement of task. For a recent National Academies report on sex and gender, see Measuring Sex, Gender Identity, and Sexual Orientation (NASEM, 2022). Though sex and gender were defined as beyond the scope of this report, this is an important area of ongoing inquiry with rich scholarship (e.g., Almeling, 2020; Fausto-Sterling, 2000; Richardson, 2013). Future work will be needed to integrate these findings and recommendations across domains and to incorporate intersectional approaches across dimensions of identity (Bauer, 2024; Evans et al., 2018; Homan et al., 2021; Merz et al., 2023).

Of note, the report focuses on the research context, and topics directly related to inequitable access to health care or clinical care delivery (e.g., physician–patient interactions) are beyond the scope. Similarly, the sponsors clarified that a comprehensive assessment of clinical practice guidelines and care pathways would be beyond the scope. However, such guidelines sometimes reference clinical algorithms and other decision-making tools developed based on biomedical research that made inferences about race and ethnicity. Guidelines built with tools and algorithms that may have racial and ethnic biases built into their modeling could also be biased. A survey of clinical guidelines could offer lessons and themes that could apply to the research context, for example, as biases occur across phases of research and in development of tools and products. However, a full assessment of clinical care or medical education is beyond the scope of this report. In addition, the reference to policy in the statement of task was understood to mean research best practices, rather than legal or government policy.

Biomedical research is a global enterprise in which data, reagents, and related resources are often shared across national borders. Clinical trials, in particular, recruit globally with only about 24 percent of clinical trial participants enrolled in the United States (FDA, 2024; see also Petryna, 2009, and Pollock, 2019). However, as discussed further in Chapter 6, racial and ethnic descriptors vary greatly in different parts of the world, calling for additional nuance beyond the scope of this report. Further, countries vary in their laws and privacy regulations for collecting data, which makes it difficult to use consistent racial and ethnic group categories on a global scale. Groups such as the International Council for Harmonization of Technical Requirements for Pharmaceuticals for Human Use (ICH) can help with developing harmonization for data collection on a global scale, and it is important that groups like the ICH critically examine the use of classificatory categories. Given this added complexity and in discussion with the sponsor during their first meeting, the committee decided to focus this report primarily on the biomedical research enterprise in the United States, with the understanding that the harmful misuse of social constructs such as race and ethnicity in research and medicine is not a phenomenon unique to the United States and with the potential for this report to serve as a resource for other more global efforts.

Audiences of the Report

There are multiple audiences for this report. First and foremost are biomedical, behavioral, and clinical researchers working across a spectrum of different types of research and research settings (e.g., academia, industry). The committee defined biomedical research expansively (see Chapter 2). This approach made it impractical to provide

specific guidance for every subfield of biomedical research but serves to welcome many researchers to consider how to use race and ethnicity in their work (including those who may not have considered the role or implications for race and ethnicity in their work). Biomedical researchers, such as those conducting applied research related to clinical tools and equations, and biomedical engineers developing wearable devices and medical instruments, as well as social and behavioral scientists, epidemiologists, and public health professionals constitute the primary audience to whom this report is directed.

Biomedical researchers will need support from other entities in the research ecosystem to successfully operationalize the report’s recommendations. The people who work for funding entities, regulatory agencies, biomedical and medical journals, professional societies, health and health care systems, and industry all have critical roles to play. In particular, the report outlines how funders, sponsors, publishers, and editors of biomedical research can incentivize investigators to adhere to these recommended best practices and can support scientists and engineers to increase adoption of the recommended best practices in this report.

THE COMMITTEE’S APPROACH AND ORGANIZATION OF THE REPORT

The committee’s goal is that biomedical researchers and others in the research ecosystem will move beyond harmful uses of race and ethnicity that create or perpetuate health inequities to a future where race and ethnicity are used thoughtfully in research and its clinical applications. To address its charge, the committee met to discuss the evidence, deliberate, and develop recommendations. The committee reviewed current literature, including existing guidance on the use of race and ethnicity in research to inform its work. The committee also hosted four public meetings to gather additional information and viewpoints. One of these meetings focused on community perspectives on the use of race and ethnicity in research. Appendix A includes more information on the study methods, including terms used in literature review and public meetings agendas.

The topic of race and ethnicity is one where it can be challenging to arrive at consensus. With members from different backgrounds and areas of expertise, the committee began by discussing fundamental questions about the meaning of race and ethnicity, concepts that are used differently across fields of research (see Chapter 2). The committee acknowledges that some feel that race should be done away with entirely. A thorough explanation about why race and ethnicity are social concepts and not based in biology is included in Chapter 2. However, given the need to track persistent health disparities and comments from community members about the importance of race and ethnicity to their identities, the committee sees value in continuing to collect race and ethnicity data, as discussed further in Chapters 3 and 6.

The committee also acknowledges the importance of language and terms. In the context of this report, the committee uses “racial and ethnic minority groups” when referring to multiple populations who have been racialized or minoritized based on their racial or ethnic identity in the United States. However, there are multiple terms, including minoritized and marginalized, that are in use in contemporary literature and could be suitable depending on the context. The committee recognizes that terms change over time and will continue to evolve to best reflect contemporary understanding and as demographic

shifts occur in the United States. Throughout the report, the committee uses the term “race and ethnicity” where relevant because the concepts are closely intertwined in common understanding and in practice. However, the committee details how dimensions of race and ethnicity can be differentiated in research through careful measurement in Chapter 5.

Defining biomedical research, which is a varied and multidisciplinary field, was also a core discussion that shaped the committee’s approach to the task. A more thorough accounting of their discussion can be found in Chapter 2 “Foundations and Background.” The committee considered different approaches for organizing their analysis and review of the evidence. Given an expansive definition of biomedical research, the committee determined that providing specific guidance for individual subfields would be impractical and could risk missing some disciplines. Instead, the committee took a more generalized approach based on the research process. This framework, which progresses from study design to data collection, analysis, interpretation, and publication, offers a common touchpoint across fields of biomedical research. Throughout the report, the committee balanced this approach by including examples that illustrated the connections between biomedical research, clinical practice, and health outcomes. Based on the gaps identified in their review of the evidence, the committee developed guidance for the future use of race and ethnicity. Future use is rooted in articulating a context-specific scientific rationale for when to use, or when not to use, the concepts of race and ethnicity, so the committee also examined other concepts and measures associated with race and ethnicity that could prove useful as tools of study throughout biomedical research. Finally, the committee formulated a set of conclusions, recommendations, and tools for researchers and other actors in the biomedical research ecosystem.

Reflecting the committee’s approach, the report is organized as follows. Chapter 2 lays the foundations for this work, providing a set of guiding principles, foundational definitions of race and ethnicity, and background about the use of these concepts in the United States. Chapter 3 examines different ways that race and ethnicity are currently used in biomedical research broadly and some of the problems that result from misuse, such as race correction in clinical practice guidelines and bias in the output from optical-sensing medical devices. Some of the existing guidance on using race and ethnicity is presented in Chapter 4, including guidance from FDA and academic journals, guidance for working with communities, and suggestions for developing clinical practice guidelines and algorithms that avoid racial and ethnic biases. Chapters 5 and 6 provide the committee’s advice for reconsidering ways of using race and ethnicity information in biomedical research and for studying variables, like social determinants of health, for which race and ethnicity are too often used as proxies. Chapter 6 includes a set of recommendations that, when implemented, will facilitate the adoption of best practices in the use of race and ethnicity in biomedical research.

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